Dementia report finds system broken

Jessica Wright -Apr 9, 2012

Dementia is the single biggest age-related disease facing Australians, with 1600 new cases diagnosed every week, and it is predicted its prevalence will double over the next 20 years, according to a new report.

The report, commissioned by the Department of Health and Ageing, finds that Australia's aged care system is effectively broken when it comes to caring for people living with dementia.

It describes the national network as ''complicated, inflexible and largely unable to meet their [people with dementia] needs''.

There are 280,000 Australians currently living with dementia.

The Minister for Mental Health and Ageing, Mark Butler, said the report - which was based on the feedback of more than 1000 older Australians, their families and carers who attended 16 specially convened consultations nationwide - made for sober reading.

''It is clear from the feedback received through the conversations that the issues that continue to beset the provision of care for people with dementia have not been given the prominence they deserve in the debate about the quality of aged care,'' he said.

''The overwhelming view of older Australians is that the aged care system is simply not meeting the needs of dementia sufferers and their families. For many older Australians, 'dementia-specific care' is matched by the reality of locked wards.

"Families want to keep loved ones living with dementia at home for as long as possible but the current system does not provide adequate support and assistance to enable people to remain at home.''

The report found that, specifically, community care packages were inadequate and inflexible and that the system was beset by long waiting times, lack of transparency in administration costs and clogged by bureaucratic roadblocks.

"It is also clear from the consultations that older Australians and their families want staff appropriately trained in all aspects of dementia, and paid accordingly,'' Mr Butler said.

"As Australians, we enjoy one of the longest life expectancies in the world but we need to make sure that those extra years are years of quality.''

The National Aged Care Alliance - an overarching body of 28 organisations representing consumers, providers and aged care workers - said a complete overhaul of the aged care system was urgently needed, adding their claim was backed by the Productivity Commission, which had made the same recommendation more than eight months ago.

Alzheimer's Australia chief executive Glenn Rees said that even after more than a decade in the job, he was shocked by some of the stories that emerged during the consultation process.

"There is a dramatic contrast between the experiences of the people with dementia and family carers who benefited from timely diagnosis and referral to services, and the overwhelming majority of those who were traumatised by poor diagnosis, lack of information and care services that had next to no understanding of dementia," Mr Rees said.

"People with dementia and their carers don't know where to turn to receive services and support.''

Mr Rees said Alzheimer's Australia was lobbying for an immediate injection in the federal budget of $500 million for dementia services.

"It is clear that aged-care reform that does not give priority to dementia will fail,'' he said. "And it is time the health system took dementia seriously as a chronic disease within a public health framework.

"Sadly it is clear too that it is not just a question of more funding and services but a lack of knowledge and respect for people with dementia in the way they are treated.

"Failure to act now will lead only to increased burdens and costs for both the nation and individuals, with the highest price for these failures paid by the families of those with this cruel disease, who struggle to care for their loved ones.''

Australian Nursing Federation federal secretary Lee Thomas said that workforce considerations were a critical sticking point for improving aged care services.

"Respondents to the Alzheimer's Australia consultation call for better paid, better trained and higher levels of aged care staff. This is a critical element of reform if we are to create a system which gives older people the opportunity to age well – with dignity, choice and quality services," she said.

Aged and Community Services Australia president Rob Hankins said the report outlined the need for more community-based care, higher-quality residential care, better access to respite and an improvement in services for people from different backgrounds.

"There are systemic problems with aged care in this country and we can't afford to just keep patching up the system and hope it will resolve itself," Mr Hankins said.

"Comprehensive reform is the only way forward and the Government must show the leadership to commit to it once and for all in the Budget this May."